Bob Saget, who died shockingly over the weekend at the age of 65, was a vocal advocate for a cure for Scleroderma.
The rare autoimmune illness claimed the life of his sister Gay in 1994, and since then he energetically raised money for the Scleroderma Research Foundation.
And even in private he movingly reached out to provide comfort to a little girl with the illness, her family revealed to TMZ.
Giving back: Bob Saget, who died shockingly over the weekend at the age of 65, was a vocal advocate for a cure for Scleroderma; seen in December
Scleroderma affects the skin and connective tissue, as well as internal organs, when the body starts producing excessive amounts of collagen.
The skin hardens and tightens, with scarring and inflammation potentially occurring elsewhere too, according to the American College Of Rheumatology.
Bob’s sister Gay was only 47 when she died after a two-year battle with the condition, which is not hereditary and does not typically recur in one immediate family.
Two years ago, Bob found out that a now nine-year-old girl named Sophie Ann Seaman had been diagnosed with scleroderma.
Heart of gold: And even in private he movingly reached out to provide comfort to a little girl named Sophie Anne Seaman with the illness, her family revealed to TMZ
WHAT IS SCLERODERMA?
Scleroderma (sklair-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues.
Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50.
While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.
There are many different types of scleroderma.
In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin, such as blood vessels, internal organs and the digestive tract (systemic scleroderma). Signs and symptoms vary, depending on which type of scleroderma you have.
Information courtesy the Mayo Clinic
He reached out to the family, including Sophie Anne’s parents Jeff and Martha, and sent personalized videos to the sick child.
In his videos he made sure to send upbeat, reassuring messages such as: ‘We are going to find a cure, sending lots of love.’
The beloved actor and comedian even helped Sophie Anne with a school project, which was a paper that she eventually titled Bob Saget: My Everyday Hero.
He assisted her over the phone during a half-hour conversation where he spoke openly about his own experiences.
Last year he gave Jeff and Martha free tickets to one of his shows in North Carolina, making sure also to pay for their food and invite them backstage.
Just one month before his death he posted a heart-melting Instagram video of the Seaman family discussing the condition for the Scleroderma Research Foundation.
Bob was found dead in his hotel room bed in Orlando around 4pm EST on Sunday, sources close to the investigation told TMZ.
Although it will take 10 to 12 weeks for his official cause of death to be made public, police saw no sign of drugs or foul play and it is suspected that he succumbed to either a stroke or a heart attack.
According to the TMZ sources he was found ‘tucked in bed’ with the lights off, suggesting he died in his sleep.
A well-placed source told DailyMail.com: ‘There was no foul play, nothing odd at all. All we have been told is that he died in his sleep. We are all just devastated.’
The way she was: Bob lost his sister Gay to the illness in 1994 when she was just 47; the siblings are pictured with their grandmother Bella
The insider said: ‘I talked to him Saturday afternoon. He had a great show Saturday night. He was the most generous, lovely guy. It’s just tragic.’
Bob had battled the coronavirus and had also been vaccinated for the disease, including getting his booster shot.
During a 2019 interview for the NIH magazine he candidly discussed losing Gay to Scleroderma after a two-year battle.
‘My sister, Gay Saget, was a school teacher near Philadelphia. She was 44 when she was diagnosed with systemic scleroderma,’ he revealed.
Awareness: Just one month before his death he posted a heart-melting Instagram video of the Seaman family discussing the condition for the Scleroderma Research Foundation
Looking back: Two years ago, Bob found out that a now nine-year-old girl named Sophie Ann Seaman had been diagnosed with scleroderma
‘She got treatment, but it was just treating her symptoms with drugs like prednisone and cortisone. She had to move to Los Angeles to live with my parents because she needed so much help. She passed away just two years later.’
Gay died just nine years after Bob’s other sister Andrea passed away at the age of just 35 after suffering a brain aneurysm.
He himself is survived by his three daughters – Aubrey, 34, Lara, 32, and Jennifer, 29 – as well as by his wife Kelly Rizzo whom he married in 2018.
Beloved entertainer: Last year he gave Jeff and Martha free tickets to one of his shows, making sure also to pay for their food and invite them backstage; pictured on Jimmy Kimmel Live!